Dravet Syndrome

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    Barbara Swoyer

    Living With Uncertainty When Parenting a Medically Complex Child

    These days, in the midst of a global pandemic, people are feeling vulnerable, anxious, isolated and, for those who are quarantined, more than a little trapped. For families like ours, who care for a medically complex child, the impact of what is happening hits hard. Many of us live on the edge day to day, required to manage every moment and aspect of our child’s care in the face of relentless disease. It is a job that never lets up. We don’t really have a choice. We do it because we have to. We do it because we love our child. We do it for a million different reasons. There are plenty of us in the same boat and we find strength in each other. It doesn’t take much to tip the scales, and the growing concern over the coronavirus (COVID-19), the new viral strain that causes respiratory infection, only adds to the agony. The complex infrastructure that supports our child is crumbling before our eyes. We are afraid for those on the front lines and fearful for the impact on our already fragile family. Our worries have grown exponentially. In spite of our circumstance, we have worked hard to carve out a life that works for us and which is our version of normal. We are aware it is one that most would not envy, and we feel the frustration of not being able to do things that others can. It’s hard, sometimes, not to feel left out, to feel like the rest of the world is going on without us while we are confined to home. We envy the freedom and flexibility of others to do what they want, when they want, without a ridiculous amount of foresight and planning. To be spontaneous. To not have to rely on others. We’ve learned, over time, to live with our limitations and to keep our focus on being content and grateful for what we have. Perspective and attitude is everything. As the COVID-19 pandemic races across our country, there has been a sudden, drastic shift. Slowly but surely, the rest of the world has stopped. People are being forced to adapt their lifestyle in a way that feels foreign. Life as we, collectively, know it has drastically changed, and the impact this is having on how people are living draws a strange but unmistakable parallel to our life as it has been for years. Suddenly, instead of being the odd ones out, we are status quo. This pandemic, in a sense, has become the great equalizer for families like ours. We suddenly feel normal. As my husband put it, “This is the first time in 24 years that I have felt normal, like everyone else.” The realization feels a bit shocking. This is how we live. Gradually, as this crisis has escalated and becomes more dire by the day, people have had to adjust. There is a sense of loss of control and inability to plan. People are confined to their homes and are feeling lonely, trapped and isolated. There is a fear of the unknown and a sense of fragility. People are struggling: to stay healthy, to make decisions with limited information, to juggle risk versus reward, to cope. Their normalcy has been threatened. This isn’t good news. It is disconcerting and frightening at best, for all of us. There is no validation here, nothing to gain from the comparison. Nobody deserves this, just like we didn’t deserve to have our child become sick. It was life-altering and shocking, and it forced us to our knees. The world as we knew it, in one day, stopped. And we were forced to change. At the time, the doctor compared it to us being struck by lightning. Now, it feels like everyone has been struck by lightning. Families are being brought together, but are struggling with the anxiety and pressure of having everyone under one roof with no clear role or direction; or, they are struggling because they are separated from a loved one and can only be a part of their lives from afar. Parents are needing to care for their children in expanded and different ways they didn’t anticipate or prepare for. People are worried about their health, their future and how they will be able to cope. They are feeling vulnerable, and the unknown of what lies ahead is massive. All the parameters that we live by, the emotions and restrictions we routinely live with, have suddenly been placed upon everyone else. The interesting thing is that, in general, our life has not changed all that much. It’s as if we are just realizing that we have lived in a comparable state of quarantine for decades. We are still stuck, as we have always been. We are constantly on guard. We assess and reconsider every social opportunity. We are uncertain of what each new day will bring. We cancel plans at the drop of a hat. We have little spontaneity. We worry all the time about something happening to our child, or us. The only difference is, along with all of this, we usually wonder what other people are doing. Now we know that everyone else is doing exactly what we are doing. We no longer wonder. In this time of uncertainty, we wonder if our struggle was this obvious to others looking in. Compared to our peers, in this moment, our life experience is a source of strength. It offers advantages and might serve us well. If there is a way that families like ours can help others in midst of this crisis, perhaps it is by sharing the coping skills and perspective that we have learned the hard way, through years of struggle and chronic uncertainty. We are uniquely qualified to make decisions in the moment, and routinely have done so without knowing what the future holds. The pandemic will test people like they have never been tested. It will affect marriages, relationships between parents and children, and financial security. There will be painful loss. We will make mistakes and we will be more imperfect than we have ever been before. People will be forced to slow down, reprioritize and reassess. Some will cope better than others. Everyone will need support and reassurance. This will not last forever, but there is no getting this right until you learn to adapt. Out of these extraordinary circumstances, a new normal will emerge. You will evolve, because you will have to. You will learn to live well with what is before you. And in time, it will be OK. We know. For more on parenting during quarantine, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 Creative Activities to Try With Your Kids While We’re Isolated at Home How We Can Promote Continuity in Special Education Programs During the COVID-19 Pandemic What to Do When Your Child on the Autism Spectrum’s Routine Is Disrupted by the Coronavirus 5 Ways to Support Your Family’s Mental Health During the Pandemic

    Community Voices

    CBD Crash Course: The Hype Lines

    Navigating the Cannabidiol

    (CBD) product landscape as a patient can be overwhelming.  Fancy websites with glittery products hint

    that by adding CBD to your health care regimen that YOU TOO could live the life of your dreams.  All your pains will just go away and vitality

    is yours for the taking.  CBD is being marketed in everything from

    hamburgers to pillows, and active wear to coffee.  Everywhere, people are talking about the

    wonders of CBD.  When we listen carefully,

    we hear consumers talking about www.foxnews.com/health/just-how-safe-are-cbd-products-experts-weigh-in and products that www.kmov.com/news/cbd-consumers-concerned-about-products-wit....  Patients

    are also talking about www.projectcbd.org/medicine/cbd-drug-interactions/p450 they didn’t get warnings for and being misled

    about potential negative consequences, like being dismissed from pain

    management over a failed drug test.  Patients

    don’t have the luxury to think about supplements like CBD as nutrition.  We have underlying issues and conditions that

    these supplements can legitimately affect, especially when it comes to immune

    system function.  It is important that we

    treat cannabidiol just like any other therapy and ask the same questions we would

    for pharmaceuticals.

    Cannabidiol

    has been an amazing tool and according to a blog.arthritis.org/news/patients-tell-us-cbd-use
    , many with arthritis and autoimmune arthritis diseases

    are trying it out.  A statement by www.who.int/medicines/access/controlled-substances/Cannabidi...
    found that CBD had no potential for abuse, a good

    safety profile, and most adverse effects were from pharmaceutical interactions

    and underlying conditions.

    Unfortunately, those of us with Chronic illness and fighting terminal

    illnesses fall into those last categories.

    We are almost always on pharmaceuticals and have underlying conditions

    or symptoms we need to accommodate.  It

    is up to us, the patient and consumer, to question claims being made, ask for

    science, and check for interactions.  Always

    double check the information being given with a trusted member of your medical

    and/or legal team.

    CBD works

    because it interacts with receptor systems in our body’s cells.  While this is important for a healthy person

    to know, it becomes essential when someone is considering CBD to help with

    chronic/terminal illnesses.  A lot of

    these interactions are desired, but people with chronic illnesses need to know

    what to expect upfront.  Knowing there is

    a risk to mitigate, whether legal or medical, can make sure the patient has the

    best chance for success.  Here are some

    common misleading marketing buzzwords that contribute to hype and general

    misunderstanding.  Marketing is designed

    to make you feel safe about a product.

    All products have hype, and the CBD industry is no different.  Their products have some serious hype, and it

    is our job to dig through it.

    Here are the top 6 patient

    picks as the “most confusing hype-lines”.

    1.

    CBD,

    even from hemp and isolates, are not “legal in all 50”.  Internationally, the same ambiguous situation

    exists.  Always check your local,

    state/province, and federal/country laws before choosing a product.  You

    may find there are THC limits, local areas may have banned hemp CBD, or some

    other complication exists.  Most

    CBD sales sites claim hemp CBD products are www.buscherlaw.com/state-hemp-legality, and will cite either the 2014 Farm Bill or the

    2018 Farm Bill.  The 2018 Farm Bill did

    deschedule cannabinoids found in hemp, but it placed them under the FD&C

    Act, giving the FDA full regulatory authority.

    The FDA classifies all cannabinoids as “www.fda.gov/media/112426/download
    ”, which makes them not so legal when introduced into

    commerce.  Just as before the Farm Bills,

    hemp and hemp CBD is subject to state legality.

    This has created a very ambiguous legal framework that no patient could

    really understand to comply with.  Add

    this governmental nonsense to the constant hums of CBD marketers trying to

    practice law and it becomes next to impossible to follow along.  Websites and hemp traders will sing about the

    federal deschedule but forget to mention that many areas still consider hemp

    CBD and CBD isolate to be illegal.  For

    example, check out this statement from atg.sd.gov/OurOffice/Media/pressreleasesdetail.aspx,

    “Current South Dakota law makes industrial hemp illegal and all

    forms of CBD oil illegal.  The only exception is the prescription drug

    Epidiolex which was recognized by this year’s legislature as a controlled

    substance under SB 22.  Governor Kristi Noem signed that bill into

    law on February 19, 2019, with an emergency clause, therefore having the law go

    into effect immediately.

    This action leaves any other use or possession

    of CBD oil as a violation of state law.”

    Always check with the local

    authorities to see if CBD is legal in your area.  Legalities are complex and “legal” doesn’t

    always mean “legal”.

    2.      You will often hear phrases like “FDA

    Compliant” or “FDA Approved”.  The only

    FDA approved CBD product is Epidiolex.  If the product is marketed www.fda.gov/consumers/consumer-updates/it-really-fda-approved, walk away.

    Epidiolex is a prescription CBD tincture that is rarely prescribed for

    Dravet Syndrome and Lennox-Gastaut Syndrome and is the only FDA Approved CBD

    product.  Also know that hemp CBD

    manufacturers are still www.fda.gov/news-events/public-health-focus/fda-regulation-c... to come out with their regulations, and as

    of this publication, they have not yet done so. (March 2020) “FDA Compliant”

    can mean many things.  Their farm may be

    FDA compliant in some way, not necessarily relating to hemp.  The packaging could be FDA compliant.  This phrase does not imply the product is

    approved by the FDA, or that the product is more trustworthy.  Right now, any implied FDA stamp of approval

    should raise eyebrows.  Make sure the

    company is clear about what they are being “compliant” about and whether it is

    relevant to hemp.

    3.      In the United States, CBD (even isolate

    use) is illegal in minors unless you participate in the state medical cannabis

    program.  Make sure you consult with a lawyer that specializes in

    CPS cases before you make any decisions.

    It seems so

    contradictory that www.youtube.com/watch

    use when you can purchase it in every corner store.  Unfortunately, every state has a loophole

    that allows them to investigate, and only a few states have taken steps to

    protect families from CPS interference.  If your state has a medical cannabis program, protect your

    child and your family.  We observed that

    investigations involving parents who are actively on the state registry tend to

    get their cases dropped.  Unfortunately,

    a lot of doctors and CBD companies are telling parents that they don’t need

    medical cards to give their children hemp CBD or CBD isolate.  Those parents are finding out the hard way.  If a salesperson is forceful and insisting

    that you don’t need a medical card, this is a red flag.  For more information and

    sources, check out this article Is It Legal to Give CBD to Children?

    4.      Watch carefully if you start hearing

    phrases like, “You have an endocannabinoid system, so you need CBD.”  Yes, you have an endocannabinoid system, and

    yes, it could plausibly be deficient.

    However, the www.projectcbd.org/science/cannabis-and-immune-system, and not something you just want to throw

    stuff at.  Right now, everything is

    theory and pre-clinical and only the most popular theory (endocannabinoid

    deficiency) is getting press time.  There

    could be other issues like over stimulation, receptor issues, and more at

    play.  Not every issue is going to be an

    endocannabinoid deficiency, or specifically related to what CBD has to

    offer.  Research is finding new

    endocannabinoids, new receptors, and new functions all the time.  Chronic illness is hard on our body, and we

    don’t have the extra leeway if we make a mistake.  Be on the lookout for those implying that CBD

    is something your body needs. This is a commonly used phrase with no real

    meaning.  Your body also has an opiate

    receptor system.  That doesn’t mean you need

    opiates or insinuate opiates are “good for you”.

    5.      Be wary when someone implies CBD is safe

    because it is from a plant.  Always

    check with a pharmacist to see if there are any important interactions you need

    to be watching for. Make sure

    you critically think about any blanket statements being made.  As children growing up in the hills, we were

    always told not to eat random berries in the woods because they could kill people.  There were mushrooms we couldn’t eat, and

    plants we had to take great care not to touch.

    Trying to make someone believe an active chemical compound is safe

    simply because it’s a plant is nothing more than a comfort zone marketing

    ploy.  The truth lies more in the

    middle.  Cannabis does have interactions

    within the body.  If it didn’t interact

    with the body, patients wouldn’t be fighting so hard for access.  Cannabis works on multiple receptor systems, www.projectcbd.org/how-to/cbd-drug-interactions, and can even cause some adverse

    reactions.  That is okay.  Often these interactions in the body are how

    we get relief, start healing, and can then talk to our doctors about lessening

    the pharmaceuticals.  I’d rather someone

    be honest than to find out when liver ALTS measure 588.   We watch for interactions and side effects

    with every other active therapy, whether supplements or pharmaceutical.  CBD and cannabis are no different.

    6.      Is CBD from hemp or CBD from “marijuana”

    better?  Guess what marijuana with a THC content at 0.3% or lower is?  Hemp.  Cannabidiol

    the molecule is the same whether it comes from something someone calls “hemp”

    or something called “marijuana”.  The

    only difference is going to be THC levels.

    Most CBD extracts come from low-THC cannabis, or hemp.  Whether an extract is effective depends on

    how your body reacts to it, and what other things are in the extract keepitlegalcolorado.org/targeting-therapy not whether it was sourced from hemp or

    “marijuana”.  If your body responds

    better to higher THC levels, then CBD from “marijuana” (or CBD with higher

    levels of THC) would be better.  If you

    respond to low-THC CBD extracts, then hemp could be the way to go.  The plants are all cannabis.  Patients really should know what cannabinoids

    and terpenes are in their products anyway.

     

     

    Meagan
    Meagan @moogie
    contributor

    To the Medical Staff Who Saved My Daughter's Life

    I know you don’t play cards all day — even though you work in a small rural hospital. To the firefighter, who happened to be a high school friend of my mine, thank you for taking my seizing baby. Thank you for cradling her, holding her and carrying her to the ambulance. Thank you for hugging me when you got out, and helping me to climb up into the vehicle. You were probably hoping for a slow night at the station, but you came to help my baby. To the ER staff who held my hand, who worked to get an IV in my baby, who ran test after test, and calmly explained to me what was going on. Thank you for your kindness. Thank you for your patience. Thank you for rubbing her forehead when she came to and was scared. I know how hard it is to take care of a sick kid. But you showed my baby love, and for that I thank you. To the small town pediatrician, who happened to be my pediatrician when I was a kid as well, thank you for listening to your gut. Thank you for listening to my rambling, thank you for being willing to let me make a choice that night but being honest with me about what you felt inside. Thank you for making sure we were settled in the pediatric ward before you left for the evening. If you hadn’t, you would have already left when she started to seize again. You wouldn’t have been there when she began to code. Thank you for staying with my baby; thank you for being a doctor who I know is both honest and kind. Thank you for setting me aside and telling me what to expect when it was time to transfer her to a bigger hospital. Thank you for hugging me and praying with me that night. Thank you for crying with me, and showing me I wasn’t alone in my feelings. I know your wife probably wished you had been home to eat dinner that night, but you were providing care to my baby. Thank you. To the nurses who saved my daughter, thank you. Thank you all for rushing into the room to save my daughter that night. Thank you for getting an IV, for calling around for extra support, and for taking care of me when you were busy taking care of her. Thank you to the nurse who helped hold down my seizing baby as she was being intubated, and thank you to the nurse who sat there holding my hand as it was happening. Make no mistake, without you, my daughter would not be here. I know that when you work in a small town hospital, it does not mean you get extra time to play cards and hang out during your 12-hour shifts. I know you often do not have time to eat lunch, or even go to the bathroom. I know that working in a small town hospital really means being on your feet all day. It means rushing from room to room, patient to patient. It means short staffed floors and doing things that are often outside of your paygrade. But you do it with love, you do it compassion, you do it because you are lead to. And for all of that, I can never thank you enough.

    Sarah Lango

    To the Teacher Who Will Be Working With My 'Typical' Child

    If you are the parent to a medically fragile child or a child with a disability, you are well aware of the ways in which the extra needs of one child stretches into every area of your life, impacting even the smallest details of your family. Undoubtedly, the life of the typical siblings changes, too. Last year, we had several emergent scenarios that took place throughout the school year due to the health of our youngest child. Because of that, this school year I wrote a letter to the teachers of my typical kiddos, inspired by this letter over at The Mighty.  I wanted to help teachers understand the way in which our every day life can potentially be turned upside down in a single moment. To the teacher of my daughter (the sibling of a child with a disability): We are thrilled that our daughter will have an opportunity to learn in your classroom this year! She is such a great kid and we anticipate watching her thrive as the year goes on. However, I wanted to make you aware of our situation at home, a situation that could, at times, affect her school life as well. Our daughter is the sibling to a medically fragile child. Her younger sister has a severe type of epilepsy called Dravet syndrome. What this means for our family is that at times our ordinary days will quickly turn to emergent chaos. It means there could potentially be nights when mom had planned to help with homework, but she ends up on an ambulance ride instead. It means there could potentially be mornings when mom had intended to make lunches, but a seizure struck before we could make it that far. It means there could be exhausting times when we stumble into school late because we didn’t get home from the emergency room until late the night before. Or evenings when she is abruptly and unexpectedly taken to stay with an aunt or grandparent because mom and dad rushed to the hospital unplanned. Or weeks when mom and dad are out of town for specialist appointments, so the normalcy of life is a bit off kilter. Sometimes she may show up to school extra anxious, or scared or tired. Sometimes you may observe her a bit more on edge, or more sensitive to situations that should not cause tears, but do. We are not making excuses for our child, but we recognize that in trying to fight for one child’s life, the details of another child can potentially fall through the cracks. The emotional strain that comes with her sister’s health issues affects all of us. We are crossing our fingers and hoping that these chaotic days are few and far between, but as our child’s teacher and the adult who will be spending the most time with her throughout this year, we feel it is valuable for you to be aware of our family dynamics. Most of the time, our daughter handles all of this so well, and there is a possibility you might not even notice a difference on the hard days. But, in the circumstance where it is not, we just want you to know, sometimes our days do not go as planned, sometimes our “normal” gets quickly altered, and sometimes we need people to understand that this effects her, too. Thank you for investing in the life of our child this year!

    Angie Mimms
    Angie Mimms @abelle
    contributor

    Receiving a Diagnosis for Medically Complex Children Dravet Syndrome

    While working at my home computer one late spring morning, I heard the muffled sound of water running. Any parent knows that when this sound doesn’t stop, a mess usually follows. The sound wasn’t stopping. I had left my 9-year-old daughter in the family room listening to music. My boys – ages 15 and 13 – were in the basement with a friend. My bet was on the boys. So I hopped down the steps to check on them. They were glued to video games, nowhere near water of any kind. Back up the steps I went, and there I noticed water splashed across the kitchen window. Had it started to rain? I leaned out the back door to check. No rain. Just my daughter on the patio with the garden hose. Wait. What? How had Anna slipped outside without my hearing the storm door slam? She was in her pajamas, pointing the hose toward the sky, flinging water back and forth with sheer joy on her face. The dog – fine protector that he was – was pretty happy too, sopping and loping around the yard. Spread on the concrete was a set of books. “What are you doing?” I asked after springing down the deck steps toward her. “I’m cleaning the house!” The words came happily from her beaming face. Well, of course you are. And the books? Yep. She was cleaning those too. I’m reminded here of those commercials for household cleaners. You know the ones: The children streak goo across immaculate kitchens and the moms just smile and get out their paper towels or spray cleaners or whatever the pitched product happens to be and clear the mess in no time. I’ve often wondered why the moms never scream, “This is the fifth time today I’ve had to clean up after you!” That day I was a commercial mom. I stayed calm and smiled and actually found amusement in the whole episode. I didn’t have a handy product to promptly dry the dog and the books, not to mention the girl, who tends to have seizures when she gets chilled. But I did have a reason to be more accepting of the situation. Just a little more than a week before, I sat in a neurologist’s office at Cincinnati Children’s Hospital Medical Center where Anna’s doctor reviewed test results with me. He explained that a spontaneous genetic mutation was the cause of the uncontrolled seizures she had suffered since she was 11 months old. The results pointed to Dravet syndrome, a life-threatening, rare and severe epilepsy that often resists medication and impairs cognition, physical abilities and behavior. I was stunned. While I had just received the news and couldn’t fully understand its implications, I did understand that after almost nine years of seizures and medicines and hospitalizations, after the ketogenic diet and the vagal nerve stimulator and brain surgery, after years of uncertainty and unpredictability and more questions than answers, we had a diagnosis. I don’t generally cry in front of medical professionals, but I found myself blinking away tears. “I’m sorry. Is this sad news?” her neurologist asked me. “No.” I said. “It’s just that… ” Words spun in my head. “It’s just that it’s been so long,” he said. “And you didn’t do anything wrong.” “Yes!” It wasn’t a good diagnosis, to say the least. But I had known for a long time that Anna’s medical condition was a severe one. Now it had a name. That name was a drop of water in the river of our lives; it sent ripples out in all directions. With that name came a sense of relief from at least some of the mystery. With that relief came a greater acceptance of my daughter’s challenges. And with that acceptance, came an even greater sense of love and appreciation for her spirit. As bad as it was, the diagnosis helped settle my spirit. For years I had questioned and second-guessed myself. But I wasn’t losing my mind. The physical and cognitive impairments, the trouble with speech – these were real and not the result of something we did or didn’t do — or necessarily from the constant changing of medicines and doses as we searched for seizure freedom. The diagnosis helped me help my daughter. With the name “Dravet syndrome” came information that I had never had before, such as which medicines may help and which may hurt, which treatments are more likely to work, and which therapies are beneficial. The name connected us to other families dealing with the same diagnosis, other children who reminded me of my own. We met families from Northern Kentucky, Cincinnati, around the country, across the world. We were no longer alone. Years have passed since Anna’s diagnosis. Thanks to the work of advocates and researchers, doctors now know more about Dravet syndrome. Children get diagnosed younger and find helpful treatments sooner, and I pray that is leading to better outcomes. But still children with Dravet syndrome have disabilities. Still, I sit in front of my computer and cry after reading about yet another young life lost to this catastrophic epilepsy. Still families live with anxiety and fear caused by unpredictable and uncontrolled seizures. Much work is left to do. While questions and difficulties remain, I am thankful for a diagnosis. It has helped me to be more focused as our family faces its challenges. It has also helped me to be more understanding so that at times like that water-dappled spring morning, I can find joy in a giggling, pajama-clad girl cleaning the house with a garden hose.

    FDA Panel Advises FDA to Approve CBD-Based Drug For Epilepsy Epidiolex

    Update: The FDA approved Epidiolex on June 25. The Drug Enforcement Agency will have to reclassify CBD because marijuana and its derivatives are considered Schedule I drugs — a classification given to illicit substances with no medicinal value. The DEA is expected to reclassify within 90 days. On Thursday, an advisory committee for the Food and Drug Administration recommended the FDA approve a prescription CBD (cannabidiol) medication for the treatment of some rare epilepsy disorders. The drug, Epidiolex, was unanimously backed by the committee. The FDA is slated to make a final decision on the medication’s approval June 27. The administration typically follows the decisions of its advisory committees. Epidiolex, which is manufactured by GW Pharmaceuticals, was originally granted a fast track designation from the FDA in 2014. The designation facilitates drug development and speeds up the review process. Fast track designations are typically given for medications needed to treat serious conditions that have “an unmet medical need.” The medication was fast-tracked to treat Dravet syndrome — a rare form of epilepsy that generally starts before the age of 1. Dravet syndrome is life-long and typically leads to a developmental disability. If approved, Epidiolex would be the first FDA-approved medication for Dravet syndrome. The drug also targets Lennox-Gastaut syndrome, which makes up 2 to 5 percent of all childhood epilepsy cases. Lennox-Gastaut is a chronic condition that causes intellectual disabilities. Both of these disorders have high mortality rates, according to the pharmaceutical company behind Epidiolex. Epidiolex is CBD-based, meaning it is derived from the marijuana plant, but does not induce a “high” or an altered state. THC is the compound in cannabis that has psychoactive properties. CBD has been used by patients for years to treat epilepsy and other conditions, though epilepsy currently has the strongest case for its efficacy. CBD is commonly sold as a “supplement” since it isn’t approved by the FDA, and supplements aren’t regulated by the agency. A popular brand of CBD is Charlotte’s Web, which was created in 2012 and named after a girl named Charlotte who has Dravet syndrome, who used the product to drastically reduce her seizures. Though the medication would only be approved for the two forms of epilepsy, it is a step toward federal approval and recognition of CBD as a legitimate therapy for some disorders and illnesses.

    Kelley Wiman

    Having Hope When Parenting a Child With Dravet Syndrome

    Kelley and her son. Everyone always says to appreciate the moments you have with someone, because they can be gone before a tear even hits your cheek. This has been multifaceted  to me for as long as I can remember. I never wanted to envision a day without my parents. So I didn’t. It seemed too big and too painful to fathom. I was right. Millions of times worse than I could have imagined. I have a beautiful family of my own. A sweet wonderful, handsome (very, very handsome) husband who works his fingers to the bone for us. He is the most devoted Daddy. I have a step daughter who I’ve watched grow into an adult. I fell in love with her first, guy aside. We got married and had a beautiful, precious cub. Jayce. My sweet, smart, fierce, fragile, breathtaking boy. He has Dravet syndrome. It’s like trying to be a mother to the ocean. So complex. So powerful. So crucial. And so wise. And quiet. And already he holds the experience of many lifetimes. A million little ecosystems in that body, not always working in harmony. The storms can be violent. Those waves can take his life. We can’t control the ocean. Just roll with the ebb and flow. I can do my part in protecting the environment and climate. But I can’t think like that. I can’t focus on the tsunami and miss the days where the water is smooth. It’s hard to look for tomorrow and appreciate today. It’s hard to fight for that every day and to savor it. But I have boatloads of hope. It’s all I have. My fleet travels this ocean. I know a lot of other oceans. Every one is breathtaking and unique. I know those mothers trying to shoo the clouds away. The distress flares are glowing. The water may seem choppy and the waves are just coming in too hard and too fast. Look farther. Look. Look for one of those boats. It’s there. Hope floats.

    Teen With Disabilities Suspended for Medical Marijuana

    Jennie Stormes made a mistake she says her son had to pay for. Jackson, who goes by Jax, moved with his family from New Jersey to Colorado Springs, Colorado, so he could have access to medical marijuana, KKTV News reported. He has Dravet syndrome, a condition that results in seizures, developmental delays and other disabilities, according to the Dravet Syndrome Foundation. After experimenting with many medications to minimize Jax’s seizures, his mother found that medical marijuana drastically reduced his symptoms. He went from 30- to 60-minute seizures to ones that lasted only two to three minutes. Stormes, a registered nurse, administers her son’s medicine through a syringe or small green capsules mixed into his food. Recently, she mixed up his lunch containers and accidentally sent Jax to school with yogurt containing cannabis pills. She later got a call from Sand Creek High School saying her son had been suspended for bringing a controlled substance to school. Though the suspension was just a day, his mother says Jax lost valuable time with his therapists at school — time the school will not allow him to make up. “I was like, ‘You’re kidding me. He didn’t do anything,‘” Stormes told KKTV News. “Jax does not have the ability to form that intent. He didn’t make lunch, he didn’t pack lunch.” Since the incident, Stormes started working with the school board to change its policies towards medical marijuana. Get the full story in the video below: Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .